Congressman Albio Sires and Senator Bob Menendez have reintroduced the Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act to expand and further coordinate efforts towards research for Tourette syndrome. This bill would promote activities at the National Institutes of Health (NIH) aimed at combating and diagnosing Tourette syndrome.
“Tourette syndrome continues to be a misunderstood disorder that is too often stigmatized, I am eager to reintroduce legislation that will work towards helping the lives of those affected by this syndrome,” stated Congressman Sires. “While symptoms can be suppressed overtime, too many individuals, particularly children, face the everyday challenge of trying to manage tics whether at school or in various social settings. Expanded and collaborative research can teach us more about the cause and treatment of the disorder to help improve the lives of those individuals impacted by Tourette syndrome.”
“Today, we reintroduce the CARE for Tourette Syndrome Act to reinforce our commitment of increasing awareness and attention to combat this condition,” said Senator Menendez. “This legislation aims to expand our research efforts into this commonly misdiagnosed and misunderstood disease, allowing us to provide families and individuals with TS the security and peace of mind they desperately need – knowing we will continue to build on the progress already made at research centers like the one at Rutgers University, to better the lives of those it affects. I look forward to working together with both the House and the Senate to find solutions that ensure this important bill is able to become law.”
Tourette syndrome is a neurological disorder characterized by repetitive, involuntary movements and vocalizations called tics. The NIH estimates that 200,000 Americans suffer from the most severe form of Tourette syndrome, while as many as one in 100 exhibit milder symptoms such as chronic motor or vocal tics. Although symptoms continue for many through adulthood, the disorder generally peaks in severity during childhood.
Specifically, this bill would direct the Secretary of Health and Human Services (HHS) to develop a new system to collect data on Tourette syndrome, including the availability of medical and social services for individuals with Tourette syndrome and their families. It would also instruct the Secretary of HHS to award grants to public or nonprofit private entities to establish new Collaborative Research Centers focused on Tourette syndrome research. Such Centers would be established on a regional basis, and would conduct research, including investigations into the cause, diagnosis, early detection, prevention, control and treatment of Tourette syndrome.
Faith Rice, the executive director of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), said the bill would bring added awareness to the disorder and could provide vital services to those coping with Tourette syndrome nationwide.
“It’s a population that continues to suffer from misdiagnosis, misunderstanding and the tremendous stigma that’s associated with Tourette syndrome,” Rice told The Jersey Journal. ”This puts a serious light on the disease, the disorder, and an awareness that we certainly could not create on own.”
Established in 2004, the Somerville, N.J.-based organization is the nation’s first center of excellence for Tourette syndrome and a loose model for what Sires and Menendez hope to replicate across the country. United States Men’s National Team goalie Tim Howard – a North Brunswick native who suffers from Tourette syndrome – sits on the organization’s Board of Directors.